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Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping
Tammie Dewan1, Lyndsay Mackay2, Lauren Asaad1
1Department of Pediatrics, University of Calgary, Calgary, Alberta, Canada.
Insights
Children with medical complexity (CMC) and their families value relational aspects of hospital care, including shared decision-making and goal-setting. This scoping review maps evidence on their inpatient experiences to identify research gaps.
Area of Science:
- Healthcare experiences
- Pediatric complex care
- Scoping review methodology
Background:
- Children with medical complexity (CMC) have high healthcare utilization.
- CMC face unique challenges during hospital admissions.
- Evidence on inpatient care experiences for CMC is fragmented.
Purpose of the Study:
- To map evidence on the inpatient experience of care for CMC and their families.
- To identify key aspects and methodological approaches in existing research.
- To pinpoint research gaps for future study.
Main Methods:
- Scoping review conducted using JBI methodology.
- Searched multiple databases (EMBASE, CINAHL, Web of Science, MEDLINE, PsycInfo) from 2000-2022.
- Thematic analysis of 49 included papers (qualitative, quantitative, mixed methods, reviews).
Main Results:
- Included 49 papers, predominantly qualitative.
- Thematic analysis highlighted the importance of negotiating care roles, shared decision-making, and goal-setting.
- Relational elements like communication and relationship-building were crucial.
Conclusions:
- CMC and families prioritize relational aspects of care during hospital admissions.
- Partnering through shared expertise, decision-making, and collaborative goal-setting is valued.
- Further research is needed to address identified gaps in understanding CMC inpatient experiences.
Background:
Children with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study.
Methods:
This scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were abstracted using a data abstraction tool. A thematic analysis was conducted.
Results:
Forty-nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non-validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision-making, common goal setting, relationship-building, communication, sharing expertise and the hospital setting itself.
Conclusion:
CMC and families value relational elements of care and partnering through sharing expertise, decision-making and collaborative goal-setting when admitted to hospital.
Patient Or Public Contribution:
This review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co-designed and conducted with the full engagement of the project's parent-partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript.
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